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Approximately 300 new days …

January 4, 2016

I wrote this back in January this year. From what I can work out not a lot has changed memory wise, I think I simply just accept that this is how it is for now.
I was searching the tv guide this afternoon to see what is on tonight and what is worth watching. I got to Ch7 and stopped looking 50 First Dates with Adam Sandler and Drew Barrymore is on. I used to love this movie. I used to think how romantic that Henry loved Lucy so much that he would get her to fall in love with him over and over everyday. I also used to think it was sad that she couldn’t remember all the wonderful (and slightly crazy) things he did for her. Then (spoiler alert) it is revealed that she keeps a pretty detailed journal. Of course, because it is a rom-com she falls in love with him, and they find a way to make it all work with her memory loss.
I say I used to love this movie because I am not so sure anymore.

For me it hasn’t been 50 First Dates but much closer to around 300 new days give or take a week or so. I started writing in a journal on Mar 9, 2015 but according to hospital information I went into hospital Feb 17, 2015 and as I remember none of this time at all I am not sure when everything started. I am living this every day and if I don’t read my journal or notes in my phone or diary or read over Facebook and messenger I honestly have no idea what is going on and I am stuck in about May 2012. That is when I can tell you my last solid memory is. I don’t know why I am stuck then I know it was around Mother’s Day which is just after mine and my twins birthday’s I know what that memory is and I can almost describe it down to the clothes we were wearing that day and the food we ate. Of course that doesn’t help me now, today in January 2016!

The image where Lucy is showing Henry her journal

So much has happened between then and now. Some things really wonderful like as a family (my parents, my brother, sister in law and three nephews and my family of five) headed off to Disneyland in Anaheim. I honestly have no memory at all of this trip. I have lots of photos which is great but to me it is someone else’s story except somehow all the people in the photos are my people. We got two new dogs, wiped from my memory. I need to be thankful it is only dogs that we got, and that we didn’t have another child like Drew does in the movie!

My hubby has changed jobs last time I remember he was working shift work for a completely different company not the case anymore, he has also grown a beard which looks great except that I get a shock every morning when I see it! My kids are significantly older (clearly!) I look different, I mean I know we all have days where we look in the mirror and can’t quite reconcile that the person looking back at us is really you, we all think we are younger, less wrinkles, less grey etc. Try looking in the mirror and having completely different hair sometime in the last 4 years I have cut it all off, and it would seem I am in the process of growing it back well today at least.

What I can tell you now living with this short-term memory loss and no apparent memory creation (though it is thought that I am somewhere making memories they just aren’t in a place I can access them at the moment according to my journals) is not nearly as fun as it appears to be in 50 First Dates. It is hard reading over journals from nearly a year ago and having no real connection to what I have written so I have to guess from what I have put down what I mean and what is really going on. Try it for just one week, try to write down all the things you think are important and then the next day in reality you could hand your journal to someone else altogether to read and get them to work out what is going on and how you are feeling. It is really hard work!

Today I read back over a lot of my journals some of it wasn’t important at all but some of it was incredibly important and very sad really to read. It got me thinking about has anything changed? I found a blog I wrote back in July last year and here is some of it because really I think there are parts of it that are exactly the same as I feel today.

The truth is for me I don’t really feel like a whole lot has changed. But I am very reliably informed that things are getting better at least physically. I think that the physical progress is much easier for others to see change in. For me I don’t remember what I was like yesterday so it is hard to know what the progress is. I can tell you that today, I am walking around with the aid of a walking stick, I felt a bit wobbly at times but I got from a to b which I guess is the most important thing. – I am still using the walking stick I still feel a little woozy but I also have a very sore big toe! Apparently I managed to get a hairline fracture in my big toe! Seriously only me! My arm I understand has also been a problem today it really just felt weak and it just takes more to think about using it. I had tingling in different parts on my arm and face as well. – My arm seems to be cooperating significantly more than it must have been in July because I am knitting again. It still feels a bit heavy but it is working.

Emotionally I am not sure that a whole lot has changed. I read that I am being treated for PTSD, Depression, Anxiety, Dissociation, and a few other things. For me this really just means that most days I feel sad, empty, a total ache in my heart (this is hard to describe really), anxious, overwhelmed and confused. In addition to that I am exhausted from feeling all of those feelings all the time. Plus I spend a lot of time (well I have today) trying to work out what is going on. I guess if you think of all those mental health things and the brain as a computer hdd, my hdd needs a reboot. So for now my brain is operating in safe mode, while the repairmen (my therapist and I) take each file out process it dertermine with this is something that needs to be kept or moved to the trash and then re-format the hdd. I think this is going to be an incredibly long process but best we take the time and do it right than do it quickly and have to redo it in a few years.

I think the most common thing everyone wants to know is if my memory has improved, I don’t think so. I woke up this morning completely confused, my head feels empty, I didn’t recognise our dogs, my husband has to orientate me to what year it is and how old the kids are and what is going on in a really quick space of time. Lots of changes have happened around the house and in our lives that I simply can’t recall. So I would say no this hasn’t improved or changed. I get through each day by reading facebook a lot I know this seems crazy but it does give me clues on things that have been going on. I think that my memory loss is the hardest part for me.

Anyone who knows me knows that I don’t cope very well when I am not in control and not remembering yesterday and not knowing what is coming without reading a journal or a daily diary is probably as far from in control I could possibly be. – All of this is still pretty much true for me. I probably appear ok, or pretty much normal, from what I read I think this is partly because I am getting better at covering or making sure I read up as much as I can before I have to interact with others. I know there are comments on how much time I am spending on Facebook but honestly it is fantastic to be able to bring me up to date in a really quick period of time! If you ever need to remember something check your activity log!

I think we made it through Christmas and New Year ok. From the photos I have seen from this time it looks like I had a nice time surrounded by our families and it looks like NYE was a great night surrounded by family. My writing tells me that while I was exhausted we managed to make it through pretty much ok.

Watching 50 First Dates it is very apparent to me how much my family loves me and especially my hubby. Every morning it seems that he brings me up to speed with the most major things and then leaves me to read if I want to. It is truly exactly like every night my slate is wiped clean and I start all over again. It is really hard for me each day, but I can only imagine how exhausting and frustrating it is for my hubby and kids having to remind me every day what is going on.

I am off now to probably find something else to watch because even though it has been on while I have been writing this up it is really kind of depressing for me because it isn’t nearly as much fun for me or the family in real life. One thing I do know for sure is that my hubby must love me to keep doing this every day!

I just love this song by Simon & Garfunkel Bridge Over Troubled Water it is all about being there for a friend in time of need. This is something that my family and friends have done for me.